AUTISM AND NEURODIVERSITY LARS PENNER- The most important thing to realize is that we're all very different from each other. [“Don't Mourn for Us”: Autism and Neurodiversity] TEMPLE GRANDIN- Autism is a true continuous trait. I mean if you look at the genetics, it’s little tiny code variations inside genes, and it varies from all the geniuses in Silicon Valley to an individual who’s going to remain non-verbal, with a lot of other problems, possibly epilepsy on top of the autism. RICHARD GRINKER- The popularity of autism as a diagnosis has been affected by this movement that is sometimes called the Neurodiversity Movement, which I think is a very valuable social movement. That social movement says that we should not always evaluate people according to some imagined norm, but we should look at people who have a range of different strengths that might have been overlooked. NARRATOR- What if we made diversity the new “imagined norm”? [NORM] This is precisely what Canadian autism activist Jim Sinclair did in the early 1990s, when he coined the term Neurotypical, which means a human with a non-autistic brain and with none of its creative variations. [NEUROTYPICAL] [non-autistic brain] [no unpredictable variations] [NEURO] NARRATOR- A few years later, Judy Singer, an Australian social scientist on the spectrum coined the term Neurodiversity, [NEURODIVERSITY] which helped distinguish people in this new international movement not only from those who see autism as a mental disorder, but also from those who blame it on refrigerator mothers, vaccines, and other questionable factors. The Neurodiversity movement captured world attention in 1993 at the annual meeting of Autism Network International, ANI, when its founder Jim Sinclair gave a powerful speech to parents titled: “Don't Mourn for Us.” NARRATOR- Non-autistic people see autism as a great tragedy and parents experience continuing disappointment and grief, but this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child that parents had hoped and expected to have. Autism is a way of being. It is pervasive. It colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person. NARRATOR- Sinclair's approach was in direct conflict with the goals of Autism Speaks, the national organization which has raised millions to find causes and cures of autism and which speaks primarily, not to those on the spectrum, but to their Neurotypical families. CLARA LAJONCHERE- This notion of wanting to cure autism has sparked an incredible amount of controversy. There are individuals on the spectrum who love their lives, and find it actually insulting that we would want to change them. But there are some kids, who are just hurting. they're in pain, they're struggling, they haven't developed language. It's hard for them to get through a day. If you ask their parents: if you could cure autism, would you? the majority of them would say yes. And it's not taking away from that child's essence. It's basically saying I want my child to live an amazing life just like any other child out there without autism. The Neurodiversity movement is also highly critical of ABA, Applied Behavioral Analysis. For instead of cultivating the unique strength of individuals on the spectrum, ABA focuses on managing autistic behaviors that Neurotypicals don't want to see. ISAIAH'S MOTHER- Your instinct is if your child's crying, just pick them up and hug them and love them. They want this attention and they are not getting enough love so you need to give them that. And that's not the case. Who is that? RICHARD- Try better. More. Good. Good job. It helps build behavior because we're reinforcing the appropriate behavior and ignoring behavior that we don't wanna see. More, please. NARRATOR- Although ABA is praised for its scientific rigor and for having more empirical evidence than other approaches, many activists find its history problematic.For back in the 60s, when clinical psychologists Ivar Lovaas pioneered the use of ABA with autistic children at UCLA, he didn't just ignore unacceptable behavior, but actually used electric shock as negative reinforcement. And in the 1970s, he and his UCLA colleague, George Reckers, used a similar ABA conversion therapy to prevent boys as young as five from becoming homosexual. Given that science is a model of empirical rigor for ABA, and the source of those studies seeking causes, financed by Autism Speaks, the Neurodiversity movement has been ambivalent toward science. Yet those scientific studies found the issue of causation much more complicated than anticipated and this proliferation of causal factors may help explain why there is so much Neurodiversity on the spectrum. Most important, the movements concept of 'neurological pluralism' is compatible with new developments in contemporary neuroscience, which no longer assumes there is a hardwired brain but rather a competition among various neurological circuits. This idea is pioneered by Nobel Price winner Gerald M. Edelman in Neural Darwinism, 1987, an idea shared by many of his colleagues: GERALD EDELMAN- Developed largely by Darwin, population thinking considers variation not to be an error but to be real. Individual variance in a population is the source of diversity on which natural selection acts to produce different kinds of organisms. ERIC KANDEL- Evolution is a tinkerer. It uses the same collection of genes time and again in slightly different ways. It works by sifting through random mutations in gene structure that give rise to slightly different variations of a protein or to variations in the way that protein is deployed in cells. RICHARD GRINKER- We can't underestimate the way in which the rise of the Neurodiversity Movement has been influenced by changes in American science and technology. It used to be the nerd, the geek or the socially awkward but very intelligent person was not successful, but what has happened is that our society has changed so that we are now valuing, in Silicon Valley or elsewhere, we are now valuing the same set of symptoms that we used to see as impairment. NARRAROR- These ideas from neuroscience are compatible with Jim Sinclair's argument regarding who should be included in the Neurodiversity Movement. JIM SINCLAIR- Our mission was to advocate for the civil rights and self-determination for all autistic people, regardless whether they were labeled “high” or “low-functioning.” We really had to make our newsletter available to parents and professionals, because [that] was the only way we could hope to affect the lives of autistic people weren't able to participate on their own. NARRATOR- Sinclair realized that many on the spectrum who couldn't speak without assistance still had other kinds of intelligence. Some of the kinds are described by Howard Gardner in his 1983 best-seller Frames of Mind. Two female voices on the spectrum provided us with a unique access to autistic subjectivity. One was Amanda Bags, a radical activist who forced us to confront the arrogance of our own Neurotypical assumptions about language. AMANDA BAGGS- The previous part of this video was in my native language but my language is not about designing words or even visual symbols for people to interpret. It is about being in a constant conversation with every aspect of my environment. However, the thinking of people like me is only taken seriously if we learn your language. In the end I want you to know that this has not been intended a voyeuristic freak show where you get to look at the bizarre workings of the autistic mind. It is meant as a strong statement on the existence and value of many different kinds of thinking and interaction. NARRATOR- The other voice belong to the more familiar Temple Grandin, who described how her mind works with great clarity and precision. Not only was she featured as one the seven autistic case studies in Oliver Sacks's 1995 best-seller, An Anthropologist on Mars, a title he borrowed from Grandin, but she is singled out as quote, one of the most remarkable autistic people of all, one who hold the Phd in animal science, teaches at Colorado State University and runs her own business. TEMPLE GRANDIN- well the thing that's important is that for everybody on the spectrum, they tend to be detail-oriented. they also tend to be a bottom-up thinker. You take all the bits and pieces and you put all the bits and pieces together to form new wholes. You know when I was a little kid, all I want to do is to draw pictures with horses all the time. Well I was encouraged to draw pictures of other things, well you can draw this stable, you can draw a place you might go riding too...an associative link. But one concern I am getting today is for kids on the high end of the spectrum. Instead of having something like horses be their fixation, or maybe dinosaurs, airplanes or something else, their fixation is autism, and I don't think that's a good thing. Autism is a very important part of who I am and I would not want to change cause I like the logical way that I think. But my fixation with things like cattle chutes, optical illusion rooms, these are things that can turn out to be the basis of a career. NARRATOR- Grandin's fame is partly based on her mainstream media representation, in HBO's 2010 bio-pic Temple Grandin, starring Claire Danes. A film made for television that swept the Emmy's and replaced Rain Man (1988) as the most realistic mainstream representation of autism thus far. RAIN MAN - Here you go Ray. You're dancing. This is it. - Yeah, yeah, yeah. I am dancing. NARRATOR- In Rain Man spectators are positioned to identify with Raymond’s neurotypical brother (played by Tom Cruise), but Temple Grandin’s bio-pic is the first feature that leads us spectators to identify with an autistic protagonist. TEMPLE GRANDIN- My name is Temple Grandin. I'm not like other people. I think in pictures and I connect them. NARRATOR- Her bio-pic use the cinematic medium to show us how a person on the spectrum actually perceives the world. How she thinks in concrete images rather than words. TEMPLE GRANDIN - I just have been telling Billy here all about our summer visitor. - Are you a cowboy? Excuse my niece, that's not how we greet people Temple. You know better than that. NARRATOR- Her aunt's Neurotypical manners may censor what Temple says but they don't affect how she sees. Temple's bio-pic let us to ask what is the impact of popular cultural on the Neurodiversity debate. CLIP - We thought Bobby was going to a school for the gifted. - Bobby is gifted. You should see what he can do. NARRATOR- Like every group, those on the spectrum look for characters in popular media with whom they can identify, characters who expand the range of autistic identity. CLIP In this particular case, your lack of femininity works to your advantage. NARRATOR The cultural debate on neurodiversity helped pave the way for retro-diagnoses—diagnosing geniuses from the past... This process was particularly resonant in the recent depiction of mathematician, Alan Turing. In the Oscar-nominated feature, The Imitation Game, Turing is presented not only as a war hero, whose crucial contributions were never fully acknowledged, but also as a homosexual who was exposed to conversion therapy and punished with chemical castration. Though his autism is never explicit, the film implies that both sexual orientation and autism are matters of civil rights. These retro-diagnoses have also been performed on fictional characters--particularly on Sherlock Holmes, Arthur Conan Doyle’s famous detective. Although in past decades, Holmes's dramatic mood swings led him to be described as manic-depressive, contemporary readers now identify him with Asperger's syndrome—a diagnosis endorsed by several doctors in the medical community, and...by other works in popular culture, such as Mark Haddon's marvelous novel, The Curious Incident of the Dog in the Night-time (2003), which is told in first person by a 15-year old would-be detective with high-functioning autism, whose primary model is Holmes. CLIP - well, there is not any time to waste then, is there NARRATOR- While the popular movie franchise turns Robert Downey’s Sherlock and Jude Law’s Watson into period action heroes, the two television series update the story, partly by strengthening Sherlock’s identification with those on the spectrum. In the 2010 British series called Sherlock, Benedict Cumberbatch’s hyperactive Holmes is paired with Martin Freeman’s weary war-veteran Watson. CLIP Show of hands. Watson NARRATOR- Also set in the present, the 2012 American series Elementary shifts the setting to New York, where Jonny Lee Miller’s Sherlock is a recovering British drug addict aided by an Asian-American female Dr. Watson, played by Lucy Liu. The casting of Cumberbatch in the Sherlock revival proves significant to many autistic fans, for he was seen as "specializing in characters who exists somewhere on the autism spectrum." But when a journalist recently asked him about this, Cumberbatch told him "to cut out that nonsense." Despite the fact that he had earlier taken pride in this association, not only in playing Sherlock Holmes and Allen Turing, but also physicist Steven Hawking, whistleblower Julian Assange and Dr. Frankenstein and his monster. Some of his former fans felt betrayed, like this blogger who writes under the name, The Caffeinated Autistic. BLOGGER- Dear Benedict Cumberbatch, I am a 33 year old queer autistic person who has two children who are also autistic. I've been a fan of your acting since I watched my first episode of Sherlock three years ago. As a person who has admired Alan Turing and has read several biographies about him, I was very excited as a person who identified with two different parts of his identity - as a gay person, and as an autistic person (the latter which has been debated, but is almost 100% agreed upon by scholars as well as people who knew him). You spoke recently about The Imitation Game, and you said that it "celebrates outsiders". I felt so very happy when I read those words. It was just a day or two later that my hopes were dashed as you denied Turing's neurodivergence, and I wondered is it okay if I'm queer, but I'm the wrong sort of different if I'm autistic? Is there something shameful about being autistic, because your manner of speaking about us seems to indicate that is so. Many of us have been subjected to abusive therapy called Applied Behavior Analysis in an attempt to make us appear as though we were not autistic. Its origins lie in Dr. Ivar Lovaas, who also worked with the "feminine boys project" to attempt to eradicate homosexuality in young boys.So please, start paying attention to what autistic and otherwise disabled people are saying about our own experiences. Don't listen to Autism Speaks, show that you actually do care about what autistic people have to say. NARRATOR- A good place to start is by listening to the voice of Temple Grandin., whose unique contribution is most brilliantly described by neurologist Oliver Sacks. His tribute to her first book shows how it laid the groundwork for the autistic autobiography as a new genre and for Neurodiversity as a compelling political movement. SACKS- “In 1986 a quite extraordinary, unprecedented and, in a way, unthinkable book was published, Temple Grandin’s Emergence: Labeled Autistic. Unprecedented because there had never before been an “inside narrative” of autism; unthinkable because it had been medical dogma for forty years or more that there was no “inside,” no inner life, in the autistic, or that if there was it would be forever denied access or expression; extraordinary because of its extreme (and strange) directness and clarity. Temple Grandin’s voice came from a place which had never had a voice, never been granted real existence, before—and she spoke not only for herself, but for thousands of other, often highly gifted, autistic adults in our midst. She provided a glimpse, and indeed a revelation, that there might be people, no less human than ourselves, who constructed their worlds, lived their lives, in almost unimaginably different ways." [Oliver Sacks]